Day 2

We know she has a lung infection. Period. It is like viral pneumonia but they have not specifically verified what kind and really don't have a lot of answers.   But they keep digging so I know they aren't satisfied with what we know at this point. 

We are waiting on a pulmonologisr and an ENT.  They have several other tests scheduled to get to the bottom of this.  For whatever reason they weren't able to do those tests yesterday.  

One moment she is giggling and acting normal.  The next minute she says her chest hurts and just wants to sit and color or be held.  I don't get a lot of questions answered yet but I guess that's better than them trying to answer questions they really don't have answers to yet. 

They are also going to reevaluate her heart murmur just because we are here.  There isn't any worry or fear regarding it, but it's been a few years since the cardiologist tracked it with an ultrasound and since she is here there is no reason not to. 

We are doing good but it's just unsettling to be here without many answers. Thanks for checking in on us.  Depending on which tests will actually happen today we may not be able to have many visitors - one test she will be put under for so there will be a lot of sleeping afterwards.  If you're planning on coming, please text me first.  Thanks for all of your support and prayers. 

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Update: 

Okay so big problems. 

The lung infection explained last night is not in any way what is wrong with her.  Apparently one of the nurses overheard the Dr group discussing it as an option and just wrote it down as gospel and passed it along to the night nurse as the reason she's here.  They have filed a committee meeting and disciplinary action to figure out how and why this could have happened and been passed along to me the way it was.  They are not happy.

But on the other hand we still don't have clear answers.  The Pulmonologist and ENT will be here today.  The GI Dr is out until Monday.... Yes Monday. 

She said If  between all of them they can decide she is stable enough to go home until Monday they may let her out.  If not she is here until Monday (worst case scenario). 

The reason is the amount of blood and the fact that she was anemic when she came in causes them concern over blood loss somewhere. 

St. Francis Children's Hospital just got real

This is my 4th summer with Shepherd's Fold Ranch and my 4th week of falling in love with the people and kids from Camp Strong with St Francis Children's Hodpital.  Watching children with cancer or cardiology challenges be able to come to summer camp and chase frogs and complain about missing mom's cooking and attending Karate classes like any other kid is so endearing. I'm so grateful God has allowed me to see these things. 

But last night my relationship with them just got REAL.  Piper has had a few bloody noses - very minor ones, and on occasion has coughed up tiny amounts of blood.  Last night however the episode was significantly more severe.  

We were directed to bring her to the ER here and we have been put through a battery of tests, with more to come. 

There have been a few things discovered but no answer as a whole yet.  On the schedule for some big tests today.  

Everyone here has been wonderful and just like I would expect with what I know of them from camp!   

We can't have a lot of visitors yet as we are still in the middle of tests.  But if anyone is down this way and has a Junie B Jones, Hank The Cowdog, or Boxcar Children book the would want to bring by... Maybe even one of the new more adult coloring book and markers (she has kind of gotten into coloring with those)  that would be great!  

Thanks for caring.  When there is something besides casting a wide net I'll update, but for now I'm choosing not to spend any time verbalizing all the things they are looking for. Until they give us a definite answer, we are just going to pray and let them talk about all the scary stuff. 

You can pray for her, and us, but for now, if you want to get to know the place I work and the place taking care of us, follow this link.   

http://m.tulsaworld.com/news/health/camp-strong-where-children-with-heart-disease-or-cancer-can/article_4d3b54d5-6884-56fa-abca-a7f04436108d.html?mode=jqm

The Ugly Cry

   

So I'm on a 2+ hour flight going to CA.  I rented a couple movies to pass the time.  I tried to be careful - no chick flicks where someone falls in love and then the love of their life dies.  I have a strict policy that no one cries alone - even if they are acting in a movie. I didn't want to sit in an airplane full of strangers bawling the famous "ugly cry." 

I browsed through the movies available, and decide on some comedies.  I envision myself enjoying the movie and occasionally having a classic silent chuckle and this whole thing would be terribly "normal". 

You see the thing is, I have had about 4 hours of sleep and have been working really long hours for about 2 weeks before that.  I'm exhausted.  I should have picked a documentary on geometry or something.  I would have been totally safe! .... Not to mention asleep!  But my trip is for business and until I land in CA I have responsibilities I feel I need to stay awake for. On the way back I plan on snoring the whole way and don't care who may take pictures  (I mean unless me drooling down my shirt goes viral --- then I will become Liam Nieson and hunt down the person with a very specific set of skills that come natural for my mom mode.  I will hunt him down and ... Focus Heather ... This is the exhaustion talking). 

But you see, I rented Mom's Night Out.  At one point or another in my life I have been every woman represented in that movie.  The very young girl who Wants to do everything right but bad choices just keep piling up on top of one another and it is nothing less than a Giant mess.  

I have been the young mother with 3 toddlers/babies - not being able to keep up with any of them.   I actually had a friend who would put her kids to bed and stay up until midnight cleaning the toy room and sorting out the toys ..... Right down to separating the plastic fruit from the plastic vegetables in the play kitchen area.  She did this because "the kids are so much happier when they can start the day with a clean organized play room!!" 😳😳  But I was always feeling like I didn't measure up to the other Moms, or to my mom, or to what I thought my Mother-in-law wanted me to be.  Trying to be in control of everything and everyone around me. Literally, the woman who was trying to herd cats and it didn't work.  I really don't handle being the person who "doesn't work". Don't handle it well at all.  I'm better now but as a Young mom I was not so good!!! 

Then I was also the mom who had just discovered she was pregnant and was panicked about how I was going to break the news to my already overwhelmed husband.  I was so shocked on my 4th baby that when it actually crossed my mind I might be pregnant, I waited for him to get home from work (didn't say a word to him) and ran to Walmart for a pregnancy test.  Walked next door to the grocery store and went straight into the bathroom and did the pregnancy test right there in  Super H! 🙄🙄🙄. Then ten years later when having to tell him about #5 --- he almost fainted.  Had to grip the counter to keep from going down. LOL poor guy 

Finally, although I have never been a pastor's wife, I can completely identify with the mom of the teenage daughter who thinks mom can do nothing right. You never get your daughter to understand you, and try to make sure the general public doesn't see you go full-on crazy .... Come on - you know what I'm talking about!  That level you have to pull out before anyone in the house will take you seriously?!  Eyes bulging, voice raised, arms flailing and general yelling nonsense with a lot of threats "I swear to goodness if you don't do your chores RIGHT NOW!  You can erase the vocabulary word "friends" from your brain - you will have no friends - you will have no life - and you will be REAL lucky to have any hair left on your head when I get through with you!!!!!!!"  That level.  

I was feeling all of the emotions of each woman, and how much they NEEDED this night out that when things started going downhill, my stress level rose immediately.  By the time they are standing in the police station and Patricia Heaton's character  accidentally gets hit with the taser I lost it. I mean I got so tickled not only was I shaking - and crying, but tiny little uncontrollable noises kept escaping.  I was bent over trying to hide it, and then realized I may be rocking back and forth accidentally.  I snuck a peak at the young man beside me and he was clearly horrified and a little bit  - nope - a whole lot scared of me. This only magnified my cackling and I noticed he undid his seat belt - no doubt in case he had to make a quick escape from this psycho that was sitting beside him.   

I was finally able to pull it together to pay attention again.  About that time the character Bones - played by Trace Adkins shared some Godly wisdom win the main character and it made me cry in a precious- sweet way.  I sniffled and looked sideways.  Clearly this young man has not lived around many women.  He was staring at me with his mouth wide open😂😂😂. I tried to explain to him it was just a funny movie but he was having none of it and is probably out there somewhere blogging or tweeting about the psycho next to him on the plane. 

I mean I did the Ugly Cry while laughing - and no one ever looks awesome while in the middle of that!  I was also traveling alone so there was no one to blame it on! 

This was a really great movie and a much needed stress reliever!  If you haven't seen it yet I highly recommend you do! 

Blessings for today ya'll!  We need 'em every day! 

Heather 

What Do You Mean She Isn't Healthy?

So for the last several weeks the Doctors have been saying some pretty scary things about my little princess. You know when they throw words around like seizures and epilepsy and .... Brain Tumors you just kind of have your world rocked.  

Did anyone ever listen to Roy D. Mercer? I mean it was like the enemy had squared up to me and said "So - How tough an old boy are ya?"  To be honest - I could have looked him square in the eye and with confidence said "Red Rover Red Rover Send  .... " IF it were me.  Maybe even if it were my husband. I mean we've been through a lot, We could do it. But when they use those words with your 8 year old - your baby.  There's a lump that cannot be swallowed.  That queasy adrenaline rush feeling that won't go away.  

She's been having headaches and dizzy spells and all sorts of troubles. She cannot just shake it off no matter how many times you tell her to 'be tough'.    So the Pediatrician sends you to a Neurologist.  Who puts her through an entire physical work-out (checking coordination and motor functions for any clues).  He orders an EEG 

And an MRI ... Where they actually check her into a hospital room ... do an IV ... and put her under.  

What a blessing when your recovery nurse is a long time friend who loves her to pieces!!!  Thank you Donna Frick! 

When I was praying about it I would have a peace about the situation but when I wasn't praying about it - those moments, those temptations to fret and fear would come knocking. 

Today we got the MRI and EEG results back.  The child is not sick.  No fever, no stuffy nose, no problems.  However, today - the sum total of the results are a sinus infection.  A sinus infection in the cavities inside her brain (there's more sinus cavities than just the ones surrounding your nose).  They've called in medicine.  They suspect this will help with the headaches.  

The thing is, I always talk a good talk.  I always say I want God's Will, but what if God's will is for us to walk through something really hard.  I am not a believer in the world's philosophy that because God is love he will never allow you to suffer.  The "suffer" is when he can either use you to minister and witness to another, or it's when he can draw you close to reveal yet another level - another way he protects and cares for us.  And that's really easy to claim when you aren't facing something scary.  But when you're praying for your 8 year old to not have any brain tumors or epilepsy I have to admit that while I begged him for her health and that His Will would be to show himself strong in protecting her health, I really had to choke on the part where  .... "Not my will but thine Oh Lord".

It is hard to come to the point where your prayer can let go and say "I know you got this." and it isn't all   Please Do What I Say Lord!!!! 

Well Praise God!  I mean this has been a hard year for our family.  We would have trusted God and walked right through it but I am so glad we don't have to.  

There are so many other Moms who do by-the-way. They get that other phone call, and they find out new levels of strength the Lord brings. Today I pray for you with a lot more sincerity than I knew before. 

In honor of Autism Awareness Month

Top Five Things I have to leave behind when on an outing with my grandchild who has Autism.

It's okay to laugh with me. 

EVERY Autistic child is different.  But I think everyone blessed with these kids in their life can identify with my trip yesterday!  WHEEEW  Here are my Top Five things that have to be left behind.

      5. Your cell phone - your purse - and anything that may distract you from giving him your undivided attention. They are slippery - they are determined - and they are instinctively smart. They wait for the 1.2 seconds you let down your guard and then they are gone like someone shot them out of a cannon. You will have to crawl over senior citizens, stiff arm a toddler coming up to make friends, and run a faster 40 than you ever have in your life if you have any distractions what-so-ever or you will never catch up with them.

      4. Your schedule. You still haven't gotten it have you. You don't have a schedule! You don't matter here! The day will go as fast or as slow as said child's mind runs in that moment. Take your vitamins, stay fully hydrated and stay prayed up!

      3. Layers of clothing. Fashion does not exist when you're chasing a toddler who can put his head down and shuffle away faster than you ever could run the 100 yd. dash. Just a t-shirt and running tights. This is my recommendation. You never know when you're going to have to crawl under a table to pull them back out and you will need the full range of motion that tights offer. I used to think that leggings aren't pants. Lived by it and posted it in frustration on social media several times over the years. If you are accompanying a wonderful member of the toddler Autism community you get a pass. Grab those leggin's Darlin' He's already in aisle 2 and you're going to have to pay for 5 jars of pickles if you don't pick it up!

      2. Friends. Your friends - yes you can have play dates but all of the adults need to stay focused on the little tribe that seems to be able to communicate all in their own language. Be careful - they are conspiring an escape and you have to be on your toes!

      1. Last but not-least ... Your Pride. You see, You are now in His world and the things he loves require you to leave your pride behind. For instance. Yesterday, I accompanied my daughter and my two grandkids to a Dr. check-up because it is impossible to do both children alone and actually make it home with both of them. My Granddaughter is a hand full to be sure but her little thought process works like ours and for the most part can figure out how to assimilate to the sign language adults do ... snap a finger and point at her? She knows she should knock it off. My grandson? Pshhhhh Snap your finger all day long lady - he didn't hear you. He is busy running through the construction manual of the chair you're sitting on in his head and if you're not paying attention, he'll have that thing disassembled and you in a pile on the floor before you can snap a second time. I watched my daughter who is a pro at this Mommy thing for Autism immediately grab a rubber glove and blow it up for him ... then she let the air out and put it on her head (her hair was AWESOME after this). Then she crawled under a table to play and do sign language with him and I have worked up a sweat just trying to figure out how to help. Finally when he could take it no more I decided that I could walk up and down the hallway with him!! Except that my grandson is technically what they consider non-verbal at this point. He can say a few words but does not have the number of words in his vocabulary that they want so that's the title we get. Back to the hallway..... where he has chosen to use probably the One word he can pronounce really well. ..... Help.  He proceeds to yell HELP!! Whenever he wants to show me something - or doesn't want to turn around - or while he is patting the floor for me to sit beside him - or when he licks the glass doors because he's trying to use all of his senses to figure out if he can get through this door. Ignore the people opening their doors to look out in the hallway to make sure you aren't harming this child or maybe trying to steal him or something.  Smile at them - they don't see how hard you're trying!

He also can wiggle his index finger at you indicating that you should follow him. When he does this you should put down your purse, shove your phone in your pocket and assume the position of the best defensive back's you've ever watched  (I tried to imitate Seattle's Defensive player -- Richard Sherman (ya ... I'm not him). He is about to duck his little head and take off. People try to talk to him and he doesn't make eye contact he just keeps wiggling that index finger indicating his motor is about to kick in gear. You cannot feel guilty about not addressing the people trying to talk to him. You don't have time. Plaster a smile on your face (that probably makes you look like an idiot but it's prettier than the frown you'll be wearing in a minute because you're breathing hard). "HELLLP!"  And off he goes. The cute little papers the Dr.'s office has posted stating they would prefer you to be quiet must be ignored and don't feel bad.

 Getting him in a chair to take his blood pressure is a little like wrestling a 30 ft. anaconda and he remembers how to say HELP really loud!! While trying to wrestle you back, he is  using the only methods toddlers know to get out of his situation. You will not have a hair do NOR make-up when he is done. There is no sucker big enough and there aren't enough stickers in the world to make up for all of this. To reward him you must go outside where he smiles the smile that melts your heart and wiggles his little index finger at you.  You throw rocks into the ditch together and you stomp dandelions and blow bubbles and he crawls up into your arms and gets you to sing to him.   Before you can get him into his car seat his little eyes are droopy and he is falling asleep.

Now you need to retrace your steps and track down your purse, hoping no one has helped themselves and charged hundreds of $ during your bonding time with your Grandson. Drag your exhausted body back to your car where you can barely lift your arms to drive yourself home and pray and tell God how grateful you are that your grandson is made exactly like he is.  There's so much to learn about him, yourself, and God - why would you ever have wished for a different journey!?!

Also, I just need to give God credit for my daughter.  The child who was always so goofy I was always reprimanding her to straighten up and act proper.  Stop putting your corn on your teeth - that's not funny ... okay it's a little funny but don't do it in public!  Fart noises and burps are NOT funny!  Please don't make your profile pictures of you with your eyes crossed and ... wow - do your eyes really do that??? Your laugh!?!  Can you not laugh just a little quieter in public you silly girl!?!

No she couldn't.  She was preparing to be a fantastic mom who can crawl under tables, wear blue hats made out of rubber gloves in the Dr. office, do sign language, giggle at the wonderful nonconformity things her son operates in and notice when he has spend hours playing with plastic eggs that he keeps putting them in the same order over and over and over.  "Mom - he is doing patterns!!"

Of course he is - he is as wonderful and smart as you are darlin'.  Thank you God for letting me see some of the weird pieces in my life making sense in my bigger puzzle picture.  You're all knowing and all seeing and I've been in the way too many times.

I need a hero!

I Need A Hero!

As I woke up this morning I had a recurring thought that has been running through my head since I was a teenager.  I need a Hero!    Then I had Bonnie Tyler's song (click the link and you can hear it while reading and you'll be somewhere near where my head is this morning) running through my head ... a little peppy for early morning but okay....  

We have put a man on the moon ... one of my friends literally held the heart of her best friend's husband while assisting in surgery (yes he lived)  ... people have mastered algebra, chemistry, trig, well... you get the picture.  Miracles - every single one of them and there are so many more!  

Back when I first uttered this dream, my Mom laughed at me.  Probably a little ashamed of me.  We came from a hard working family!  We were not afraid of hard work! So for her daughter to lament and long for this invention might have been a little embarrassing. 

Every morning when I approach my sink I am more often than not met by the same sight.  Dirty Dishes??? NOOOOO  You see I have raised a large family.  I can keep up with dishes, glasses, silverware etc.,  What plugs up a dishwasher?  What job does every child avoid? And every housewife for that matter????  

Pots and Pans!  UGH!!  You know those things that don't fit in the dishwasher well and prevent the rest of the spatially submissive items from getting into the load?????  I want out of the box.  Out of the box as we know it...

I Want Disposable Pots & Pans! 

Is that too much to ask?!  Environmentally friendly (because I don't want future generations pulling up this blog and blaming me for ruining the earth) --- stove top - oven safe - inexpensive - and does not cause cancer DISPOSABLE pots and pans!?  Anyone?  Anyone?  Pioneer Woman??  Oprah?? Rachael Ray?? Wolfgang Puck???  Any of you smarty pants out there can help a girl out???

You see I have grand babies and children and a husband - we all love playing outside together, playing games, planting flowers, riding horses, drinking coffee on the porch swing and I DON'T WANT TO STAND THERE SCRUBBING MY POTS AND PANS!!  (YELLING)  CAN I GET A WITNESS!?!?!

So to my great grandchildren - when you are cooking in disposable pots and pans and then playing with your babies more, you can thank me.  Because a long time ago your Great Granny had this idea and whined about it ... and posted her blog on Pinterest and someone ran with it.  They submitted it to Shark Tank or Donald Trump or whomever else has the moooolah to get this thing going and now you are able to have what I longed for ... for decades.  I love you.  And I'm Still making your life better.  

Your Welcome

Love, 

Your Granny 

Yes - this is what I looked like regardless of what the family history books say! ;) 

A Moment in the Life of Autism

My Grandson

If you are a Grandparent, you know what that title means to you.  Precious wonderful piece of your daughter (or son) who brings you joy, exhaustion, love, laughter and you can send him home when he gets tired!  

Then comes the diagnosis ... Autism.  It isn't so much a surprise because you watched him miss one milestone after another. You watched other children his same age take off running and skipping and talking and playing with others his age without difficulty, while your daughter says the daycare sent home another sad note for biting or hitting.  Then there are the pictures the daycare posts  on the FB page.  There is always the cute group picture of all the kids playing, and then there's the picture of yours, alone in the picture because group play is just too difficult for him to navigate and he chooses individual play time.  God Bless them for adding a picture of him, but it is as sad as it is wonderful.  Just another reminder that your heart extended has a really really hard time.  

Oh people are full of suggestions and superior looks and think they're pretty wise when they tell you to just whip him some more.  It didn't ever really make me that mad, but it's exhausting.  If there's one thing I was never accused of is not knowing how to hold a firm line with a child.  But this isn't it.  Children who need a firm line are throwing their fits to manipulate, to get their way.  For an autistic child, or mine anyway, there is no getting his way.  It's like his whole mind and body is turning in on Him and he is fighting back as best he can - you are just caught in the crossfire.  No he isn't throwing that fit to get something.  He's fighting to regain something ... peace and calmness in his mind.  

I've resigned myself to the fact that people don't get it and for their sake I hope they never will. 

But my little super hero?  At 4 years old he can't talk yet.  He can say about a dozen words... maybe.  He loves me fiercely.  But fights me with even more passion.  Every morning I wake up and try to get my own child with challenges out the door on time (this never happens).  I meet my daughter at the daycare where she drops my granddaughter.  Because she has to get to work before he can be walked into his Special Ed classes at the Elementary school, I meet her and drop him off when the time is right.  

Transitions are hard.  This first week back to school after Christmas break is the hardest I've ever seen. When I opened the car door this morning he had taken his sippy cup and practiced how far he could spit with all the milk inside. My daughter handled it like a champ. She just grabbed a cloth and started cleaning it up while telling him he Can. Not. Do. That. Anymore.  I have 2 bite marks on my hands from trying to buckle him into his car seat.  Both of those occasions he is unable to let go.  I physically have to put my other finger in his mouth and pry it open to get him to let loose.  

From the outside, or just looking at my role in that - it is a little humorous. However, when I really sit and think what's happening in his mind and emotions to cause that kind of reaction it really grieves me.  Both times I've gotten back in the car and cried. 

This week after picking him up he screams the entire way to my daughter's school, where she has been plugging her ears the whole way and unlike the regular child, she is more than happy to get out of the car and head into school.  This also makes me sad.   I had a mom moment for my little one where I thought "I can't do this to her every morning."  Then I had another mom moment for my older girl, where I thought ...  "I can't let my daughter go through this alone.  There are plenty of days she gets back in her car and cries.  She isn't going to do it alone." 

And just about the time I am completely unsure of what to do.  I put him down just inside the elementary school and the tiny little 24lb thing runs to his teacher.  I yell "Goodbye Bubbie have a good day!"

He gasps and turns around and throws his arms open as wide as his tiny little body can get them and runs to me and hugs me very tightly.  He makes the noise I've come to recognize as his attempt to tell me he wants me to sing "our song" .... and I do.  "I love you.  A Bushel and a Peck.  A Bushel and a Peck ....  AAAAAAAAAAAND a hug around the neck!"  He giggles, crawls down and Runs back to his teacher and they disappear around the corner.  

Meanwhile, I stand there still feeling the spot where he almost drew blood 3 minutes ago and feeling how much he loves me right in the middle of it all and I pray to God for some kind of deliverance.  Complete and total if it's God's will.  But I know sometimes challenges are allowed to come our way so we can learn to walk with God a little closer because of them.  So I pray.  For exactly the level of deliverance that is God's will.  For my Grandson - My Daughter and Son-in-law - For us - for his Dad and his side of the family.  

Now that you've read this -- you know what I've gone through for about 30 minutes each morning.  There's other challenges with my youngest daughter that magnify my emotions by the time I get to this little guy. 

Some of you have said you can't imagine.  And I can't do the moments justice with words.  My daughter does this all day.  You see, sometimes children with Autism don't sleep very well and our little guy is one of those. But if you encounter my daughter who is doing this hard thing called being a Mama - if you encounter me ... or all of us during these 30 minutes of every day?!?   

Say a prayer for us.  We probably need it.